We try really hard not to let our altered life hold us back from enjoying what is also a very rich and beautiful life. But, I cant deny that we often face some challenges along the way.
In my ‘adventures of an altered life’ series I aim to share with you the ordinary fun of an extraordinary journey. This will include accounts of our days out, holidays away and general life in the fast lane.
I’ll also be sharing the difficulty in making huge decisions for Harry and his future face and life as well as the results of those decisions – often hilarious and heart warming, always nerve wrecking and full of never ending hope.
Great to have you with us to share these adventures. Buckle up, it can be a bumpy ride!
Back in April 2018, I wrote about an eye-opening conversation I had with a legal professional about the steps I need to take to protect my disabled son after I die. When you are a parent of a child with disabilities or significant additional needs, thoughts about what...read more
Parenting is full of hard decisions at the best of times but when you are making decisions for a child with special needs, life can be even more challenging. In my past role as a primary school teacher and now as I visit primary schools as part of my charity More Than...read more
Figures to be released this month following a survey by the BBC show an alarming increase in hate crimes directed towards disabled children. In Staffordshire and Cheshire alone (I live on the border of both counties) hate crimes have increased by over 300%. Initially,...read more
From the start of this I am going to say that being a little taken a back when you see something that you’re not expecting is normal. It is in fact, physiologically impossible to avoid as the neurons in your brain are disrupted slightly when they receive information...read more
Years ago, whilst medical practitioners were well trained in the art of diagnosing and treating conditions they were less concerned with the emotional welfare of the patient. They were merely a vessel for the doctors to work with. Nowadays, thankfully, it is widely...read more
School holidays for parents can be a challenge at the best of times. Finding the places, time, money and energy to entertain the children is always a test of the patience and bank balance but when your child has additional needs, this is even harder. Although Harry...read more
Ive spoken before about how I didn't really cope very well with the news that one of my premature twin boys had been born with one half of his face developed (nothing to do with his prematurity). I was stunned beyond words and to say that that day changed me forever...read more
I am quite used to explaining why Harry's face looks different to most nowadays and if facial disfigurement is something you would struggle to explain to your child then please check out my bog post on 7 ways to help your child understand facial disfigurement as the...read more
Harry recently had planned surgery on his eye socket and as ever, I found myself with time on my hands as I waited for him to return to the ward. I sat in the café and then at the side of the hospital bed and I got thinking about all the times I had been here. Waiting...read more